Amy Started Pumping at Age 11
Amy's story starts much like anyone else's. She was 9 at the time and in seemingly perfect health. But on March 9, 1996, with a fasting blood sugar of 287, she was diagnosed with diabetes, much to the shock, and horror, of myself and my husband. Our instructions from our dr., the same physician who delivered both my girls, was to go home and have a "normal weekend". Was that ever an impossible statement to follow! She did not start on insulin for 4 more days, being the picture of "perfect" health. In hindsight, this scares the heck out of me, but we were just following Drs. orders!
So began our new life with diabetes. Once on insulin, things were relatively smooth. Amy seemed to have accepted the fact that her life would now consist of strictly regimented eating, sleeping, exercising and insulin shots. She had no problem doing the blood tests, but giving herself a shot was a whole other story. After 2 1/2 weeks, she finally did do her own shot, at which she cried for quite a while afterwards - tears of relief from the stress of knowing she needed to do this and did indeed succeed. But, she remained what I lovingly called a "slow poke", pressing each needle to her skin and putting it in very slowly. Agonizing to watch, to say the least. We had almost daily calls from school about Amy's lows. Thankfully, she has always been able to feel them, and has never had a bad low.
Then I discovered the Internet, and promptly pulled up as much information on diabetes as I could. I had already depleted our local library of all it's information, much of it very outdated! I found a wonderfully supportive website, Children with Diabetes. It is there that I met Ellen, and other parents like her, talking about these things called insulin pumps and pediatric endocrinologists. No one had ever mentioned them to me before. I listened to everything said, read all the stories at KidsRPumping, attended forums, and finally broached the subject with my husband. He looked at me like I was crazy! All I wanted was a way to help Amy, and here he was looking at me like I said I wanted to send her to the moon!
Well, I continued to talk to people, asking as many questions as I could think of. After getting material from both pump companies, talking in length to my husband and Amy, watching the videos again, talking again, we decided that this sounded like our next logical step. After all, no matter how hard we tried, and believe me, we tried, we just could not seem to control the lows! Amy's insulin's just did not peak when they should have, and lowering dosages just sent her sky high. So, after seeing her pediatric endo for just over a year, in September of '97 I brought up the topic. I was so excited to finally have gotten to the point of a decision, that I was not expecting the response from her Dr. Yes, she had patients on the pump, teens only, and felt that, for various reasons, Amy would not like it. Instead of coming home elated, I felt crushed. And instead of talking about it much with us, they instead used the time to try and get Amy to do her shots faster. They tried in vain to get her to give her CDE a shot. Thankfully, the CDE was paged, and when she left the room, Amy burst into tears. She did not want to give Bev a shot - she loves this woman, and didn't want to hurt her. That was the end of that!
We came home, bubbles burst, but not totally defeated. I got right back on the Internet and talked to anyone who would listen. I vowed to learn more and stand up for my daughter better next time. Things seemed to get better - her numbers were calming down somewhat, the lows were not as frequent, though we had to make her eat when she didn't want to prevent them, and she was switched to Humalog, which in itself helped a lot. Amy started indoor soccer, and because it is more intense than outdoor, they switched lines often, so she had better luck avoiding the lows because it was shorter bursts of energy, not the whole game. When she went back to the dr. in January of '98, her A1c had come down to 7.2 and I felt at the time things were going well. I spoke briefly with her dr. about the pump, letting her know that we were still interested, but not pursuing it at this time. There just seemed to be more I needed to learn. I really wanted to hear the negative side of pumping, and no one could tell me what it was!
For the next 3 months, I talked to many, many parents of pumpers, hearing all the wonderful things it did for their child, but not much negatives. Could this be true? I was skeptical, I just knew someone had to have had a negative experience and gone off the pump. At the time, I couldn't find that person though! Amy, Gary and I talked about it some more. Was this really what she wanted? Would she be willing to do all the testing required? Middle of the night tests? Was she responsible enough? The answers from her to all these questions was a resounding "YES!". So, in preparation for our endo visit in April, for the month of March, Amy kept detailed records of what she ate, when she ate it, counted the carbs, how much insulin she took and did 6 - 10 bg tests daily. I knew this time I was going to stand up for what Amy wanted. But, I also felt that it had to come from Amy, this request for the pump. Amy was not a quiet child of 11 years old by any means. In fact, you usually heard her, humming, singing or chatting before you ever saw her. But, not with adults! Knowing this, I asked her to make up a list - include in it all the things she thinks will be good about having a pump, all the things she thinks will be bad about the pump, and what it will or will not do for her. I was so impressed with all she wrote! I gave it back to her on the way to her dr., and told her it was her ticket to the pump.
At her endo visit in April, we saw an intern 1st, who just so happened to have a brother on the pump! We spoke with him at length, then the dietitian, then the CDE. By the time her dr. came into the room, she knew we wanted the pump! She sat down, looked at me, looked at Amy, looked at her record keeping. She said, "So, you want to go on the pump?!" Amy said quietly, "Yes." She wanted to know why. Amy pulled out her list and read all the things on it to her. I was so proud of her I could have burst right then and there! Dr. Sauder looked at me, and with tears in both our eyes, said, "Ok, you've got yourself a pump!" Amy's A1c was still good, at 7.8, but what made an impact on the Dr. was the fact that Amy said she just doesn't ever feel good but knew the pump would not be a cure for her.
So, with no battles from our insurance company, Amy started pumping on June 10, 1998 at 10:03 a.m. (but who's noticing!!) She went "live" with Humalog from the start at her Drs. office with 4 other kids who were there 'just to find out' what it is all about. After a 6 hour training session, eating, bolusing, snacking, etc., we were free to go home. Here I sat, in the safety of her Drs. office, not wanting to leave! Now, I knew all I needed to know, long before we got there, and I still didn't want to leave. Amy sensed my hesitation and said, "Come on Mom - I'm ready - trust me.". I took her hand and we left to go home to our new life.
It has been over 9 months now since that day, and boy, have things in our house changed!! Amy grinned all the way home from the Drs. office (1 1/2 hour drive), and I swear she hasn't quit! She is so proud of herself, and I am too! Within 2 days, I had a daughter I never knew existed! Gone were the awful lows, the mood swings, the agonizing shots. I had a daughter who was laughing, smiling, and so full of energy, it makes me tired just watching her. She has truly blossomed since that day, growing into a responsible, carefree teenager. She started 7th grade in August with a new sense of well being and a zest for life. She is almost too active these days, doing cheerleading, basketball, year round soccer, and now track! Our family has also benefited from Amy's pump. Gone are the schedules, limitations, forced eating, etc. The only schedule we have now is when to change her site! And I believe Amy has made a difference for other kids at her endo group. They watched Amy closely, and now they have established a good pre-pump protocol and training, and Amy is no longer the youngest pumper - there are many younger than her, with more and more each month switching.
Has it been smooth sailing for her? Well, honestly, not all the time. She adjusted extremely well - her Dr. was amazed how quickly her bgs smoothed out. This lasted a few months. Then the hormones kicked in - she has grown almost 4 inches since that day, and continues to do so! She is so active in her sports, that we are having a tough time finding a combination of basals, boluses and extra snacks that works all the time - but we are working on it and getting closer. We know she would not be able to do all she does now with the way she was on MDI - she just didn't have the desire or energy. She still tests often, and has really come to hate the record keeping, but we are working on that too. Would she give it up and go back to shots? No way!! "Not in a million years!", she says! She is free to be herself - happy, carefree. A typical teen. Her average bgs are good, and the highs are easy to correct. The lows are infrequent, and respond much better to treatment w/o the long acting insulin fighting against her. She has spent weekends away from home and taken care of herself very well. She is great at carb counting (better than I am, I admit), and can do all her own management, though we do ask that she lets us stay involved - she will have to do this for the rest of her life, until a cure is found.
Best of all, she feels, and looks, great!! Her eyes once again have that sparkle, and she is full of energy. Yes, it is more work. Yes, it can be costly, especially without insurance. But, knowing what I know now, I would give up almost anything to help her stay the way she is today - free!
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